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Showing posts with label consumer health informatics. Show all posts
Showing posts with label consumer health informatics. Show all posts

Monday, August 8, 2022

What is health journalism?

According to wikipedia that there are not many courses or career paths specifically on medical journalism, but it is hard to imagine that this field is not going to expand in future.

Recently the McMaster Daily News  reported on a YouTube channel called ViolinMD created by Dr. Siobhan Deshauer. She was a fifth year medical resident (recently finished residency successfully) but has been vlogging about her experience quite frequently since she started residency. She was a graduate of the Michael G. DeGroote school of medicine, which is why you can get a BA in music (violin) and still get into a medical school like McMaster. In one of the episodes she mentions "medical journalism" as she did a stint doing such for ABC news as a consultant on their medical news team. I can't recall that specific episode  - because I have watched so many of them -  but we can imagine that one of the reasons she got that consultancy work was because of her creative media skills vlogging her real lived experience on the front lines.

In Canada one of the most famous medical journalists might be Andre Picard, health columnist for the Globe and Mail. His recent book "Neglected No More:The Urgent Need to Improve the Lives of Canada's Elders in the Wake of a Pandemic", shed a lot of light on the state of long term care in the Canadian system.

There is a health column in the New York times called "Diagnosis" written by Lisa Sanders MD, who used write scripts for the TV Series House. I watched the TV documentary version of it about solving rare medical mysteries, like it is detective work.  Of course there are the likes of Sanjay Gupta, Chief Medical Correspondent for CNN, etc.

There are also investigative journalism books that really delve into medical issues. Michael Pollan wrote "How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence" which is a master study of psychedelics research. The book by author  James Nestor called "Breath: The New Science of a Lost Art" is a pioneering investigation into the new research and evidence on human breathing and the effect on our overall health. It is fascinating to see how these science minded though "non-health practitioners" explore these fields so relevant to medical well being.  There are many more books by journalists that explore medical and health issues. 

An area tangential to all this are the scientists who study the reporting of health information in various media looking for evidence of factual inaccuracy, let alone stories that create false hope or deceive the public. Timothy Caulfield is famous for debunking the myths and misconceptions, and the McMaster Health Forum has an evidence based health research group focusing on policy decision making for various health topics of concern.

Saturday, July 17, 2021

Home Epley Maneuver: Ear Crystal Vertigo from Youtube Instructions

Have you ever woken up in a state of vertigo when you rise from the bed - the room spinning around so much you have to stay lying down? You start to wonder what you ate the previous night. Well, it could just be crystals in the ear moving out of their proper channels that signal sensitive areas of the ear which results in the spinning sensation. What to do?

How can we trust all the information we search for on the internet, especially health information so vital for the state of our well being. We often enact this advise without professional medical advice. But if the information we find comes from health professions.

In the case of ear crystals, here are several instructions posted by medical professionals for maneouvers you can do to try and correct the ear crystal vertigo problem. The formal name for the instructions is the Epley manouever,

The instructor....

Dr. Danielle Tolman, PT takes the time to show you how to perform an Epley Maneuver at home to treat Benign Paroxysmal Positional Vertigo (or displaced crystals in the inner ear that causes positional dizziness). Additionally, she shows you how to determine which side (left or right) is the side with the displaced crystals and provides you with tips to ensure your maneuver has the best chance for success.

NOTE: It is recommended that if you have vertigo, that you first see a healthcare professional or vestibular specialist to determine the right course of treatment for you. The Epley maneuver is primarily used to treat a specific form of positional vertigo. There are many other causes of vertigo, as well as many different types of treatment.

You can find a vestibular therapist close to you by visiting www.Vestibular.org and using their Provider Directory. Be sure to check out the Vestibular Disorders Association (VEDA) for additional information and resources.

Also recommended are physiotherapists like on the healingvertigo.com website. Sometimes headaches and room spinning are caused by vestibular migraine! 

http://www.healingvertigo.ca/


Friday, February 24, 2017

The myUHN Patient Portal - Infoway Award Winner


The myUHN patient portal has won a second place award from a Canada Health Infoway contest. Here is the presentation they gave:
 http://imaginenationchallenge.ca/wp-content/uploads/2017/02/myUHN-Patient-Portal.pdf

Their infographic on the uptake of the portal is very impressive by the numbers - numbers which have been suggested as viable in research on patient portals (They didn't mention concern for the security of personal health information):
 http://www.uhn.ca/corporate/News/Documents/myUHN_infographic.pdf

The pilot study is over and a full launch began January 30, 2017. It is expected that 250,000 patients will register for it in 2017! Very, very interesting that the portal is integrated into all stages of the clinical experience and by all personnel.

Based on my research on patient portals this looks to be the very promising. Sunnybrook Hospital myChart was also a great pioneer in this area and they have taken a page from their book. It also appears to be an ideal integration solution that I think would work best for a healthcare system.

But what about primary care? Is there an API for that? And why are family docs still so worried about liability or whatever for using a PHR?

Looking closer at myUHN it is very much just a portal or window on the hospital EHR, with a limited but very useful and important set of interaction tools. It is not a personal health record where one can self-report and journal one's health, as is the one developed by McMaster Family Medicine, now called KindredPHR.

If I get sick, I am going to Toronto and the UHN:
 http://www.uhn.ca/PatientsFamilies/myUHN







Saturday, February 11, 2017

Pushing Drugs - American Style: Watching the news makes people sick.

This is a post from the blog of Professor emeritus Dr. Richard Hayes, who taught Buddhism and Sanskrit at McGill University, and is now back home in the 4 corners area of the United States. Dayamati Hayes is also a Quaker, peace activist, vegan, and a conscientious objector from the Viet Nam war. As a friend who I have known on internet lists and now on social media for more than several decades, Dr. Hayes is well known and respected for his wit, wisdom, and insight into our human condition. In fact, there are too many excellent posts one could share from Richard, but this one is only a sample, and one that has some relevance to digital health:

http://dayamati.blogspot.ca/2017/02/pushing-drugs-american-style.html

Watching the news makes people sick

At the outset I must confess to being addicted to watching the news on television. Although my favorite televised news sources are on PBS, on most nights I supplement the PBS News Hour with the news on one of the traditional network stations or a cable news channel. Something that has repeatedly struck me in watching the evening news on traditional network stations is that advertisers have obviously learned that the vast majority of people who watch the evening news are suffering from indigestion, irritable bowel syndrome, erectile dysfunction, atrial fibrillation not caused by a heart-valve problem, moderate to severe psoriasis, rheumatoid arthritis, osteoporosis, depression, insomnia, restless leg syndrome or dry eye disease. If not afflicted by one of those conditions, they are being assaulted by meatballs or chicken wings.

Not all the commercials are pushing drugs, of course. Interspersed with all the pharmaceutical products are commercials featuring lawyers who are prepared to sue pharmaceutical companies for offering products that have life-changing side effects, and health insurance plans that complement Medicare to provide coverage to pay for all those pharmaceuticals that TV viewers are urged to ask their doctors about. Given the evidence of television commercials, remarkably few of the people who watch the televised news are under the age of sixty-five and have sound minds in sound bodies.
An often-heard claim of those who are convinced that the Affordable Care and Patient Protection Act has all but destroyed the health-care system in the United States is that the ACA (which they persist in calling Obamacare) has driven insurance premiums through the ceiling, thus bringing financial ruin to small businesses and confronting hard-working Americans with having to choose between health insurance and sending their children to overpriced universities. What is missed in this analysis, of course, is that health insurance is expensive because medical care and pharmaceuticals are expensive. Also left out of consideration is that almost every pharmaceutical product sold in the United States is available in Canada for a fraction of the cost.

Why don’t Canadians pay their share of the cost of drugs?

A claim I have heard many American make, clearly a claim that they have learned from the pharmaceutical companies themselves, is that the prices of pharmaceutical products are so high in the United States because it costs pharmaceutical companies a great deal of money to do the research necessary to develop new products. Some American friends have even showed indignation that Americans are subsidizing Canadians, who derive all the benefits of expensive medical research but pay none of the cost. Once, when I was still living in Canada, I received an email from a (former) friend in the United States who accused me, in language unsuitable for anyone not in either the navy or a motorcycle gang, of being a freeloader who was enjoying good health at the expense of poor Americans. That claim was false for two reasons. First, I have almost never been prescribed a pharmaceutical product and tend to avoid over-the-counter medical products. Second, there are better explanations for why pharmaceutical prices are outrageously high in the United States. So the answer to the question “Why don’t Canadians pay their share of the cost of drugs?” is that they in fact do pay their fair share. Americans pay more, not because they are subsidizing freeloading Canadians, but because Americans pay far more for products than it costs to develop and manufacture those products.

Why do Americans pay for overpriced pharmaceuticals?

The pharmaceutical companies typically claim that they must charge high prices for their products because of the high cost of developing them. It cannot be denied that running controlled tests on new products and making sure the products meet safety standards is costly. It should also be pointed out, however, that advertising the products once they are developed is also costly. To that can be added that pharmaceutical companies also tend to pay shareholders rather high dividends. When health care products are manufactured by for-profit corporations that have investors to reward with high dividends, then costs naturally rise. While the claim of many advocates of free-market capitalism is that competition keeps costs down, the opposite is often the case. If two companies are competing for a share of the market, the cost of the competition—the advertising of products to potential consumers of the products and to potential prescribers of those products—can be quite high.

Neither of those kinds of advertising is necessary. There is no justification whatsoever for running expensive advertisements on television that end with the line “As you doctor whether…is right for you.” There is no need to make the patient into a sales representative for a product that the patient may end up buying. If someone has, say, osteoporosis, then it should be sufficient for the physician to suggest a range of possible treatments, and to tell the patient the desired effects and the likely side effects of each of the possible treatments. And that information should be given directly to the physician in the form of the results of clinical trials, not in the form of slick presentations delivered in the context of work-vacations at expensive resorts. The cost of disseminating objective information is relatively low, whereas the cost of trying to persuade a physician to prescribe product A rather than the almost-identical product B is much higher.

One way to bring medical costs down is to make advertising of medical products illegal, as it is in some countries that have lower costs for pharmaceuticals and hands-on medical care. Another way is to have government-imposed limits on the amount of profit a company can make on a product, as is also the case in some countries that have reasonable consumer-costs for health-related products. A third way is to have a government-run insurance plan that negotiates prices with pharmaceutical companies and imposes a cap on how much a pharmaceutical company can receive for its products. There is no need for a government-run plan to be managed by the central government. In Canada each province has its own plan, and no two provinces have exactly the same setup.

Health care is far too important to be left to the vagaries of markets in a for-profit corporate scheme. The good health of the entire citizenry is far more important than the bank accounts of capitalist shareholders. There are plenty of other markets in which investors can make or lose their money. Pharmaceutical companies, manufacturers of medical devices, clinics, hospitals and retirement homes for the elderly should not be in the private investment sector of the economy. (Neither should correctional facilities, but that is a matter for another day.)

Americans desiring affordable health insurance should first advocate for more affordable treatments, and that is best achieved by a not-for-profit health-care system. They should be asking for, in fact demanding, more government involvement and less private-sector investment in products designed for health. Such a change in outlook would, however, require that Americans first seek a cure for their addiction to free-market capitalism and the delusion that the best way to keep costs down is to let the market determine prices. That strategy has been tried again and again, and it has failed again and again. It is time for Americans to considered an alternative system (not to be confused with “alternative facts”).

Next time you see a television commercial for an expensive treatment that you have seen a hundred times before, instead of simply reaching for the mute button on the remote control, ask your doctor whether socialized medicine is right for you. If you doctor says No, then consider seeking a second opinion. 

Wednesday, February 4, 2015

Personal Health Record Push to Apps

I sometimes follow the HL7 group on Personal Health Records. I received this email from a member of the group. I find it interesting that pushing medical records to a personal health record is becoming better:

NBB4C makes it easier for providers to share health information with their patients so that their patients can do what they want with it.





February 2015



Clearing the Way for Patients to Get Access to their Data
National Association for Trusted Exchange Unveils New Trust Community for Exchange with Consumers
WASHINGTON, D.C. (February 3, 2015) – The National Association for Trusted Exchange (NATE) today kicked off its new NATE Blue Button for Consumers (NBB4C) Trust Bundle at the 2015 ONC Annual Meeting with a surprise display of interoperability in patient-mediated exchange.  Shortly after NATE’s announcement, Greg Meyer, Director, Distinguished Engineer, Cerner Corporation, demonstrated how a provider using a Cerner electronic medical record (EMR) can simply push a patient record to the patient's personal health record (PHR), in this case to the Humetrix iBlueButton app running on the patient's smartphone.

The new NBB4C Trust Bundle helps relying parties to identify consumer facing applications (CFAs) that meet or exceed criteria considered to be the most important characteristics of a trustworthy steward of consumer health information, while still enabling patients to benefit from the value of having access to their health information.  Participation in the trust bundle will facilitate secure exchange of health information from provider-controlled applications to consumer-controlled applications such as PHRs using Direct secure messaging protocols.

“Thank you to my colleagues at Cerner and Humetrix for helping NATE demonstrate the capabilities of the new NATE Blue Button for Consumers Trust Bundle at the ONC Annual Meeting.  Greg’s demonstration today shows that the NBB4C is ready now to enable real world exchange between provider-facing applications and consumer-facing applications, empowering the consumer to get access to their data,” said NATE’s CEO Aaron Seib.  “Our industry achieved a major milestone today.  We studied the issues around securely sharing information from providers to patients and together we took a leap of faith.  Consumers across the country will now have more control over their care.  NBB4C gets the information flowing to where it should be: in the hands of the patient.  I look forward to the day when patients across the nation routinely download their health information into a consumer-facing application of their choice and use it to improve their lives and the lives of those they love.”

The NBB4C Trust Bundle is the result of the next generation of NATE’s ongoing PHR Ignite Project and incorporates lessons learned from NATE’s administration of the Blue Button Consumer Trust Bundles.  Over the past year, NATE and a task group made up of thought leaders in the patient-mediated exchange space worked together to develop a set of criteria and expectations that balances what is a ‘must have’ for today and what can wait until tomorrow, what is practical as a starting point and what is a showstopper that would kill consumer engagement if introduced.  In November 2014, NATE crowd sourced the trust framework, calling for and receiving comments from across the industry.  In January 2015, the NATE Board of Directors approved the workgroup’s recommendation for release into production.

“The NBB4C establishes a practical framework that will enable patients to securely exchange health information with their providers without burdening the patient with unnecessary steps to obtain their data and share it with whomever they choose,” said MaryAnne Sterling, Consumer Ombudsman for the NATE Board of Directors.  “As a long time caregiver for my aging parents, this work is important to all of us who manage healthcare on behalf of others.  I have confidence that applications participating in the NBB4C will meet or exceed my expectation that my family’s health information will be confidential and secure.”
Interested CFAs may begin onboarding to the NBB4C Trust Bundle now at http://nate-trust.org/trustbundles.  Stakeholders interested in participating in the next phase of NATE’s work in consumer-mediated exchange should consider NATE membership or subscribe to news from NATE’s PHR Community.
# # #
NBB4C makes it easier for providers to share health information with their patients so that their patients can do what they want with it.
About National Association for Trusted Exchange
The National Association for Trusted Exchange (NATE) brings the expertise of its membership and other stakeholders together to find common solutions that optimize the appropriate exchange of health information for greater gains in adoption and outcomes. Emerging from the Western States Consortium, a pilot project supported by the Office of the National Coordinator for Health Information Technology (ONC), NATE was established as a not-for-profit organization in May 2013. Consistent with NATE’s mission to address the legal, policy, and technical barriers that inhibit health information exchange between entities within a state and across states, NATE leads and participates in a number of ongoing and emerging projects in the HIE domain. NATE has been operating its own Trust Bundles in production since November 2012 and recently took over administration of the Blue Button Consumer Trust Bundles.  Working with a broad set of stakeholders through multiple task forces, crowdsourcing and a call for public comment, NATE is proud to make available the first release of NATE's Blue Button for Consumers (NBB4C) Trust Bundle beginning in 2015.

About Cerner 

Cerner’s health information technologies connect people, information and systems at more than 18,000 facilities worldwide. Recognized for innovation, Cerner solutions assist clinicians in making care decisions and enable organizations to manage the health of populations. The company also offers an integrated clinical and financial system to help health care organizations manage revenue, as well as a wide range of services to support clients’ clinical, financial and operational needs. Cerner’s mission is to contribute to the improvement of health care delivery and the health of communities. Nasdaq: CERN. For more information about Cerner, visit cerner.com, read our blog at cerner.com/blog, connect with us on Twitter at twitter.com/cerner and on Facebook at facebook.com/cerner.
As of February 2, 2015, Cerner Corporation acquired Siemens Health Services.  Certain trademarks, service marks and logos set forth herein are property of Cerner Corporation and/or its subsidiaries. All other non-Cerner marks are the property of their respective owners.
About Humetrix
Humetrix has pioneered the development of innovative consumer-centered IT solutions over the past 15 years, which have been deployed around the world.  The company’s award winning Blue Button enabled apps are the mobile embodiment of the U.S. Federal government Blue Button initiative available to more than 150 million Americans. Humetrix’s HHS award winning emergency and disaster preparedness mobile apps are now being advocated by EMS agencies across the US and were demonstrated at the White House Innovation for Disaster Response and Recovery Demo Day last summer. For more information, visit www.ibluebutton.com and www.humetrix.com


Copyright © 2015 National Association for Trusted Exchange. All rights reserved.
Contact email: meryt.mcgindley@nate-trust.org

You are receiving this message because you have an interest in health information exchange.

Tuesday, January 27, 2015

Personalised Medicine and/or Personalised Health Information Services

I came across a website and eHealth service recently called Medivizor. Seems like I have had the wrong idea about what "personalised medicine" means. I needed to enter it as a search term in Pubmed and discovered 932 articles that had nothing to do with my idea of it. That is, my idea was more in line with the health information services provided by Medivizor. The articles I found in Pubmed were more like "personalized genomics or pharmaceuticals". For example, this article: "Metabolomics as a tool for drug discovery and personalised medicine. A review."

While there may be nothing wrong with that, especially if they want to use genomics to replace parts in me, my idea had more to do with the kinds of health information one should be getting through a personal health record (ePHR), depending on one's own unique state of health. But if I do a Pubmed search on "personalised medicine and personal health records", I get almost exactly what I am thinking about (but only 6 articles). The first article is called:

Wang HQ, Li JS, Zhang YF, Suzuki M, Araki K.
Artif Intell Med. 2013 Jun;58(2):81-9. doi: 10.1016/j.artmed.2013.02.005. Epub 2013 Mar 5.
People search the net for health information and Google is a vast resource. It is better to narrow the scope and only get the health information related to one's personal conditions or searching - be they chronic or not - and to make sure that information is trusted. The Optimal Aging Portal is one such service, but at the current time, that information isn't being personalised or fed into individual ePHRs. All is not lost: patients do have their family doctor for personalised medical attention. End of story.

Getting that trusted health information, if it isn't directly from your family doctor, is a work of monumental scientific promise. A recent overview article that caught the interest of the health informatics community is found here: "Stop Googling your health questions. Use these sites instead":
 http://www.vox.com/2014/9/8/6005999/why-you-should-never-use-dr-google-to-search-for-health-information
That's a lot of knowledge translation to get healthcare consumers to wise up about the health information they are seeking.

The best idea would be if the there is a health informatics professional(s) in the family health team who can work in consultation with the family doctor so that personalized and trusted health information most relevant for them is getting to them through the ePHR. Can't leave it all up to AI and algorithms, but who knows?





Friday, October 3, 2014

Optimal Aging Portal is the 'Rotten Tomatoes' of health advice


    Dr. Doug Oliver, associate professor of medicine, uses the new McMaster Optimal Aging Portal. The new website uses evidence summaries, blog posts and web resource ratings to present health information in an easy-to-understand way.
October 1, 2014

Optimal Aging Portal is the 'Rotten Tomatoes' of health advice

Canada’s seniors are increasingly turning to the web to self-diagnose illnesses and maladies – without a clear understanding of whether the information they’re relying on can be trusted.
That will all change today with the launch of the McMaster

Optimal Aging Portal: a go-to place for Canadians to find quality health and medical information on senior life.

The website brings together research evidence about clinical, public health and health systems questions and presents it in an easy-to-understand way.
Key features include evidence summaries, blog posts and web resource ratings, which help to sort through the masses of other resources available online.

Anthony Levinson compared the ratings system to that of popular sites like Rotten Tomatoes, which aggregate user ratings of things like movies.

“There are many other online resources that deal with health and aging available, but what sets the Optimal Aging Portal apart from the crowd is its emphasis on providing only the best evidence, and telling you why it’s considered the best,” said Levinson, an associate professor of psychiatry who leads the design and development of the website and holds the John R. Evans Chair in Health Sciences Educational Research and Instructional Development.

“The portal filters out the noise and makes it easy to understand how scientific evidence and other types of information can help you. We’ve become like the Rotten Tomatoes of health information.”
Suzanne Labarge, McMaster’s Chancellor, has a keen interest in ensuring the public has access to information that can promote healthy aging. In 2012 she gave $10 million to the University to establish the Labarge Optimal Aging Initiative.

“With the web you don’t know who to believe and who to trust. There is so much misleading information around and, frankly, a lot of people are selling snake oil. You really want to know you’re doing something good for yourself, not something stupid. We decided having a trusted source would be really important as part of the Initiative.”

To help the public learn more about the portal, two online discussions are planned.  The first webinar on Oct. 15 from 3 to 4 p.m. will focus on showing citizens how to use the portal’s various features to find information on issues and health concerns. The second webinar on Oct. 21, also at 3 p.m., will focus on how the content of the portal is evaluated, and specifically on the web resources ratings. Information on registration may be found at www.mcmasterhealthforum.org

The portal may be found at http://www.mcmasteroptimalaging.org. The site is already the premier health resource found on the home page of the Government of Canada’s online source for seniors at www.seniors.gc.ca.
- See more at: http://dailynews.mcmaster.ca/article/optimal-aging-portal-is-the-rotten-tomatoes-of-health-advice/#sthash.PLSn1LK6.dpuf

Thursday, October 2, 2014

National Institutes of Health Informatics - Education Series Fall 2014

National Institutes of Health Informatics

Announcing eSafety Series: Ensuring the Safety of our eHealth Systems and Programs
eSafety Series
Ensuring the Safety of our eHealth Systems and Programs

November 19 & 26, 2014
Live, Interactive, Online Sessions - 12:00 -1:30 PM ET
A Joint COACH and NIHI Program
Click Here for More Information

Special Rates for COACH Members and NIHI Colleagues
Patient safety has become a major concern in health care. Key Institute of Medicine and Canadian reports starting as early as 1999, underscore the importance of being safety conscious and proactive in identifying safety risks in healthcare. Today’s eHealth systems are increasingly important in enabling improvements in patient safety, but they can also inadvertently introduce new risks into the healthcare environment.

This online program introduces the COACH eSafety Guidelines: a comprehensive resource for health information professionals and others with a responsibility to ensure that eHealth systems are built and operated in a manner that reduces the risk to patient safety. The Guidelines provide a sound basis for implementing an eSafety Management Program including the assessment of risks using the eHealth Safety Case.
Session 1: Introduction to eSafety & the eSafety Management Program - November 19, 2014
This session will provide a foundation for understanding the issues and opportunities for addressing safety issues in eHealth systems and cover the main steps in setting up an eSafety management program .

Session 2: The eSafety Case - November 26, 2014
This session will introduce the eHealth safety case. The safety case is the safety equivalent of the privacy impact assessment and threat and risk assessment.

Register for eSafety and get 25% off of the coilbound edition COACH eSafety Guidelines. Email Cheryl, ccornelio @ coachorg.com to arrange this discount.  Available only to eSafety session registrants until November 18.
COACH
Canada's Health Informatics Association
NIHI
National Institutes of Health Informatics

Fall 2014 eHealth Education Line-Up
eHealth Future Trends
October 23, 30 & November 6, 2014
Usability Testing Essentials
November 13, 2014

 

National Institutes of Health Informatics
Website:
www.nihi.ca
Contact Us: info@nihi.ca; 1-800-860-7901

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Wednesday, September 24, 2014

Better Health Today - very interesting stores from Health Infoway

Canada Health Infoway (or Infoway)  does a lot of interesting things, while sometimes managing to stay in the background. Their sponsored website "Better Health Together" is digital storying telling about the benefits of health information technology. Although this appears to be just fluffy anecdotal advertising for the benefits of digital health, I suppose there is a need to educate the public. Try taking their Quizz to see if digital health is working for you. Now, this is where we really need to think about doing research on the effectiveness of ehealth systems, and not just collect anecdotes. Nevertheless, I was skeptical that I would see any benefits accruing to myself from the Quizz but was surprised to realize, having had recent encounters with the Family Health Team, that the Electronic Medical Record has been working for my benefit.

Wednesday, January 29, 2014

Public Health Informatics or Consumer Health informatics

What is the difference between public health informatics and consumer health informatics? First a basic knowledge of the different kinds of healthcare governance systems used in the country where you are situated is needed for the right context. Being from Canada, I understand we essentially have a public supported healthcare system. Our next door neighbour has Obamacare. The land of our Mother Queen has the NHS, which is apparently one of the world's largest employers, right up there with the Chinese military.

I have seen textbooks on public health informatics, and I imagine there are some for consumer health, but most of the evidence points to consumer health information being everywhere. The informatics side of it is more difficult to contend with. And when you consider that most of the known world doesn't have public or government supported healthcare, you are really looking at private, for profit, or consumer health.

The evidence for "for profit" healthcare is that it is bad for your health and might kill you. This is to disregard for a second dangers to health in the ordinary run of the mill statistics on patient safety, medical errors, hospital viruses, etc. The hippocratic or medicine buddha vow universalistic compassionate purpose for free medical treatment also comes with a price tag in limited resources, skills, and knowledge. Humans helping humans out of love is after all the only principle worth trying to apply to improving quality of life as a return on investment.

With the push of IT into healthcare comes the warning that applying IT into standards of care and therapeutic interventions requires evidence that it works, is cost effective, and is generally worth the change management stress of the push factor. Would public health support more IT for patients as part of the general healthcare standard of care if it is proven to reduce hospital costs, improves quality of life, reduces errors, etc? You betcha. Probably though a lot of IT projects for healthcare start out experimental and are only available through private networks and citizens with deeper pockets. That is a consumer health choice.

Here is a Gunther Esyenbach definition of "Consumer Health Informatics" from a BMJ article:

Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems. Consumer informatics stands at the crossroads of other disciplines, such as nursing informatics, public health, health promotion, health education, library science, and communication science, and is perhaps the most challenging and rapidly expanding field in medical informatics; it is paving the way for health care in the information age.

That is all well and good of course, but it means almost anything. When you talk about Public Health Informatics, you have a more dedicated field of investigation into such things as infectious disease, pandemics, syndromic surveillance. It always makes me think of Google Flu, which is an insane way search queries on Google can predict disease outbreaks better than the CDC or other public health surveillance systems. And then there is the phenomenon like HealthMap, which really illustrates this well.




Speaking of maps, lets take a look at what a consumer health information map of medicine would look like. It just so happens that the NHS has exactly that, a Map of Medicine, or "See what your doctor can see with Map of Medicine Healthguides". When you first go to this website you need to accept a disclaimer. I didn't read it but I think it has to do with something like "you are about to read health information that only an expert like your family doctor knows anything about so for the love of Christ be careful from here on in". What the heck, I will try to copy and paste that disclaimer in here because it is so interesting (after the diabetes flowchart).

In reality, I was actually kind of shocked when I clicked on one of these healthguides and found it was a information flowchart right out of 1960s programming land. I will link to the one for Diabetes here. The sheer brilliance of the healthguide that makes it different from just your average consumer health information page (which it strongly asserts it is not meant to be for), is that when you click or mouse over the little "i" for "Information", you get a flash or javascript window with detailed information about that condition on the path for the flowchart stage. A PDF printable view will give you all the information bubbles from the flow chart. Here is only the flowchart:


Welcome to Map of Medicine Healthguides

Patients and carers

Disclaimer

The Map of Medicine is intended for use by healthcare professionals in a clinical setting. The Map of Medicine should not be used as a substitute for a healthcare professional's diagnosis or clinical decisions, by healthcare professionals or other users.
The treatment responsibility of a patient lies solely with the healthcare professional responsible for that treatment. The Map of Medicine is not exhaustive and may not reflect the most recent medical research. By continuing to access the Map of Medicine, you agree to accept our Terms and Conditions.

Healthcare professionals

If you are an NHS user in England, excluding London, please access the Map of Medicine using either your Athens login or your Smartcard. This will also provide access to care maps developed for use in your local area.
If you are a healthcare professional working in an area without a licence for the Map of Medicine, please register to access national care maps.
For more information about Map of Medicine licensing and access, please visit our website. Map of Medicine licensing







Thursday, January 16, 2014

Google broke Canada’s privacy laws with targeted health ads

This story is currently receiving a lot of media attention currently and I reposted they headline and story from The Globe and Mail:

http://www.theglobeandmail.com/technology/tech-news/google-broke-canadas-privacy-laws-with-targeted-ads-regulator-says/article16343346/?cmpid=rss1

I left the word "watchdog" off the headline because the Canadian Privacy Commissioner isn't a watchdog. There is no privacy police but there is a privacy policy. Not a police dog, but a policy dog. Google might pay a fine? No problem for Google probably. Not many privacy statutes have teeth is what they say.

This story reminds me again that I want to write more about the face-off between Public Health and Consumer Health. This is a prime illustration: Google is consumer health using targeted health ads based on your browsing search inquiries, and the Government of Canada is Public Health, the collective servant of protective measures based on principles that come somewhere other than making a profit - serving the common good by way of utilitarian ethics.

Most of the time when it comes to health information, I am highly sympathetic to "Dr. Google".  I will pick up this thread later because I want to say more about how I see the differences between Public Health and Consumer Health will have an impact on informatics.

If anyone wants me to remove the AdSense ads from this blog, because you are offended by the personally invasive use of targeted ads relating to your personal health search on Google, please let me know. That's the way the cookie crumbles, as they say.




Friday, September 27, 2013

eHealth Sources of Wellness

Disclaimer: opinions expressed here do not necessarily represent the policy of McMaster University, where I am employed.

I was checking the student wellness website at McMaster and immediately saw the eHealth application and benefit. First, there was a list of apps for smartphones on wellness and fitness <here>. Since I don't have a smartphone I can't testify about the worth of these apps. All I know is that everybody (and their dog) these days you see on the street is staring more at a phone than anything else in the environment. McMaster's employees website also have excellent resources for health and wellness, part of that movement toward corporate wholeness and a healthy workplace.

Another one of the great resources I found on the McMaster website was a link to a depression symptom checker. Now, that is the sort of thing you can find on some of the major consumer health websites, but this depression checklist was very good - had received research testing, face validity, evaluation etc. Problem is, I can't find the link to it now, but it was kind of like this one < here >. Maybe that is why people use the common consumer health websites - stuff is easy to find there. The thing is, if depression is part of ones' own personal health inventory, these should be integrated into one's personal health record, which should be easy to find, and accessed as often as one uses a tooth brush.

Should a personal health record also include apps and records for wellness and fitness, and counselling resources, and yoga videos, dental x-rays, MMR shots, etc.? Yes I think they should. This was also a question I once asked the late Kevin Leonard at a health informatics conference. At that time people at the conference were thinking mostly about personal health records as portal views of the physician's electronic medical record. Kevin thought everything related to one's health should be accessible in a electronic health record. Dr. Leonard was one of the leading advocates for personal wellness in the age of electronic health records. When I learned that he died of complications from pneumonia and that he had Crohns, I can understand more his personal mission. Why can't there just be One Record? < Patient Destiny >







Tuesday, August 27, 2013

Crowdsourcing rare diseases for patients - Crowdmed

I recently discovered two crowdsourcing sites for medicine after starting to wonder how it would work in an ehealth type of application. Strangely, they both have a similiar name and function if I am not mistaken, medcrowd.com and crowdmed.com.  I am going to talk a little about Crowdmed as it looks more interesting.


To my mind, this is a very powerful crowdsourcing site to fetch opinions on rare medical conditions without an IBM Dr. Watson nearby. Is is a trusted source of information? I wouldn't know, but I like the way the site works, according to this article in the new scientist:
Anyone can join CrowdMed and analyse cases, regardless of their background or training. Participants are given points that they can then use to bet on the correct diagnosis from lists of suggestions. This creates a prediction market, with diagnoses falling and rising in value based on their popularity, like stocks in a stock market. Algorithms then calculate the probability that each diagnosis will be correct.
Here is the welcome email from the founder and CEO Jared Heyman:

Here’s a quick refresher on how CrowdMed works:
  1. Patients complete a questionnaire, which collects information regarding their symptoms, medical history, family history, basic demographics, medications, and lifestyle.
  2. Once a case is submitted, CrowdMed invites hundreds of Medical Detectives (“MDs”) to recommend potential diagnoses and bet on the ones they think are most likely.
  3. CrowdMed’s patented prediction market technology harnesses ‘the wisdom of crowds’ and provides patients with a short list of the most likely diagnostic suggestions to discuss with their doctor.
I started CrowdMed because I watched my younger sister, Carly, suffer through three years of debilitating symptoms, visits to two dozen doctors and specialists, and over $100,000 in medical bills before she was finally diagnosed with a rare but treatable illness. She was CrowdMed’s first test case, and our phenomenal community of Medical Detectives collaborated to accurately solve her case in just a few days, proving that large crowds working to solve a problem are often smarter than even the most expert individual. I want to share CrowdMed with other patients so they don’t have the same experience Carly had. Read more about CrowdMed’s story.
To get started, log in to CrowdMed and choose ‘Solve a case’ or ‘Submit a case’. And don’t forget -- for every 1,000 points you win solving cases on CrowdMed, you can donate $1.00 to the patient of your choice on Watsi and potentially help save two lives at once.
We love to help bring patients one step closer to the right diagnosis and treatment, so please visit CrowdMed today!
Together, we can help save lives.
Jared Heyman
Founder, CrowdMed 

Thursday, May 9, 2013

Consumer health information discoveries

I have been finding a lot of consumer health information websites, both local and international - a whole bunch of them - and I think it all started when I went to the announcement yesterday for the CISCO/McMaster University Professorship in Integrated Health Biosystems, as well as a Research Chair in Bioinformatics. This doesn't have a consumer health informatics label on it, but should have a Big Data one and be a separate post. Patients come into it when data from clinical trials will finally not go to waste but will be cross-linked with research databases to be put to use for medical research. If personal health records ever catch on, and patients consent to have data (whether de-identified or not - but probably de-identified) used for research, this would also be a mine of information as the original vision for PHR was to include genomic records, the intent being the development and perfection of personalized medicine.

This made me think of Dr. Danny Sands who teaches Medical Informatics at Harvard and is working for CISCO. He had a presentation at a conference (AHIC) where I was also delivering my first student paper presentation. Anyway, I read Danny's bio at CISCO which lead me to a blog he participates in called e-patients.net. It has interesting links to the Society for Participatory Medicine, and the Journal of same.

Impressed with that find, I came across by happenstance the meforyou.org website - a website that can cure you. For some reason this site reminded me about some research and journal articles I read, on how intercessory prayer doesn't work scientifically speaking.  It is a website inspired by Facebook new media but created by U of San Francisco:

UC San Francisco is the only university exclusively focused on human health. For 150 years, we've tackled the world's most vexing health issues, from diabetes and malaria to AIDS and cancer. We are driven by the idea that when the best minds come together, united by a common cause, great breakthroughs can be achieved. Because we believe it is perhaps the greatest single breakthrough that can be achieved, we have committed ourselves thoroughly to the realization of precision medicine. We began this movement knowing that we could not do it alone, and continue assured that we will do it together. Join us.

And then I found this surprising and local "searchless" health information website - hi - consumerhealthinfo.ca (a URL I wished I could have claimed). You can't not appreciate the layout, and user interface (think old people with no time to read extensively.) I think Dr. Mike Evans  ( Dr. Mike Evans curates the best health information found online. ) contributes to this site which lead me to his blog and website, which is simply brilliant, and this viral video!




And finally after this amazing journey just seemed to be beginning, Dr. Evans recommended the ultimate consumer health informatics website NHS.UK  I had recently read on a Yahoo website the UK's National Health Service was in the top ten biggest employers in the world! Well, a lot of them were busy preparing this website, and I relish reading their entire medical encyclopedia someday.

Thursday, April 4, 2013

Health Coach - York University Program

I was at an National Institute for Health Informatics (NIHI) conference at York University when I heard about York's Health Coach program. From my relatively short time studying and being involved with Health Informatics, I really think this program will have relevance in the future. Here is part of the description I thought most interesting:

"York's commitment to health coaching is related to the increasing capacity of 21st century technologies to eliminate the need for office consultation. Many tests that are presently implemented or planned during medical office consultations will be planned by phone and undertaken at home as primary care and specialist physicians increasingly use remote monitoring to precisely assess patient status. As this trend develops, patients and caregivers will become increasingly motivated to improve behavioural effects on health. The health coach will be the first line of contact in stimulating and supporting health-behaviour change, acting in alignment with treating physicians. This improves the scope of services being delivered and lowers delivery costs by leveraging cost effective people."

It does sound to me in-line with Dr. Eric Topols' "creative deconstruction of medicine", but I haven't read the book yet, and have no idea if he mentions this type of role. Dr. Topol will be a keynote speaker at the eHealth conference in Ottawa this spring. Certainly, from the research I have seen on personal health records, there is room and a need for Health Coaches.